Lymphedema Patient Education

This was originally done as an editorial post and was based on discussion in our support group Advocates for Lymphedema.

As the explosion continues throughout the internet on the establishment of new site supposedly relating to lymphedema, the importance of what is said becomes even greater.

The Editorial - Lymphedema Patient Education

We who have lymphedema are usually met with either indifference or
ignorance of our condition by the medical community. From the
discussions in so many of the online lymphedema support groups, this
would outwardly appear as one of the biggest obstacles to achieving
both a correct diagnosis and treatment of the condition.

I want to share a post I made in our Advocates for Lymphedema group,
this past week in reference to this:

My response:

You are absolutely correct Anne, and that the result is going to be the same if untreated…same
end….same complications. There are also so many challenges too. Not
only is education for the medical community critical, but the larger
community as well…including those who make the laws.

But, I am beginning to think patient education may well be the greatest
challenge of them all. There are so many many sites on the internet
with credible, valuable information.

Organizations like the National Lymphedema Network, Lymphatic Research Foundation, Lymph Canada, Lymphoedema Association of Australia on and on that work as hard as they can to bring this information to
the patients. Yet, I have noticed that the amount of misinformation has
absolutely exploded…and what has happened????

Patients are drawn to that instead of to the solid information. At some
point we as patients have to have enough self value and discernment to
demand proof and evidence for what we read….and stop devouring info
that in the long run is going to be damaging for us.

I know that sometimes it seems I go overboard about this. Maybe I
do…but lymphedema is something that I have had to experience every
single, solitary day of my life. And when the curtains falls, it
probably won't be from lymphoma…it will be from what is happening
with the hereditary lymphedema.

So for me it is serious serious business. A quickie example and then
I'll get off my soap box

The very best document available any where on travel precuations with
lymphedema is from the National Lymphedema Network….and to their
credit, they have updated it a well based on new information.

Yet…circulating now among the online support groups is a document
ontravel precautions specifically for chronic venous insufficiency. The
sad thing is that patients are gobbling this up and thinking it will
help them with lymphedema. What's up with things like that????????

Those precautions for CVI will spell serious trouble for lymphedema
patients…so why are we reading and believing that document while
ignoring the NLN's document….I honestly truely don't understand this.

So how do we crack this nut??

How do we get patients to care enough about themselves to want peer
reviewed, credible information?

OK….I'm done….time for another round of morning coffee.

Pat

Examples of Lymphedema Misinformation

There are other glaring examples from just the last couple weeks.

In one group a woman posts that she uses the “ancient Mayan Abdominal
massage.” Why? because she claims it helps circulation and helps “organ
alignment.”

In yet another group, someone says we need to have a vegetarian diet
because there are toxins and bacteria that immediately go to the
lymphatics of the neck when we eat certain foods and meats…even
before we swallow the food.

Then there was a post on the 7 stages of lymphedema….ironically this
list is an old staging system for lymphatic filiarsis and has nothing
to do with either primary lymphedema or secondary lymphedem as we
experience it in the industrialized nations.

And in the same group that brough us the air travel misinformation and
the staging info another one that states in stage zero, the lymphatics
are dilated. Wrong, it depends on the lymphedema involved as to whether
or not the lymphatics are dilated or constricted.

I could go on and on, but I am sure you get the jest. There simply is
no substitution for evidence based medicine and scientific information.

This kind of proaganda is put out through the internet by patients who
act as self-appointed “gurus.” and seldom is it questioned.

Then we wonder why the medical community looks down on and frowns upon
their patients participating in these groups.

If we do not, as lymphedema patients, do not care enough abou at
ourselves to seek out, lay hold of and use verified, clinically tested
information how do we expect the medical community to care about us, to
respect us, or to take us seriously?

Lymphedema Patient Education: An Ongoing Need and Continuing Problem

“Why didn't someone tell me I could get lymphedema?” “Don't doctors and nurses know anything about lymphedema?” These are the two most common questions I am asked by patients when I speak to support groups or to individuals who have lymphedema.

“What should I say?” “When should I say it?” are the two most common questions I am asked by healthcare professionals when discussing lymphedema education for patients with cancer. Both groups have ongoing, unmet needs and continuing problems.

Patients say they have a right to be told about their risk of lymphedema as part of the informed-consent process prior to deciding on their courses of cancer treatment. They also expect the information to be accurate. According to healthcare professionals, providing such information during early stages of cancer treatment may be overwhelming to patients and the information may be forgotten. Because of the limited amount of education about the lymphatic system and its function in medical and nursing school curricula and the lack of evidence-based studies about lymphedema risk reduction and management, healthcare professionals often do not feel adequately prepared to provide lymphedema education. As nurses, how do we bridge the gaps, particularly when both groups' points of view have merit?
Nurses are aware that patients have the right to know about symptoms associated with their health care and how to manage them. We are taught that our role is to meet their educational needs. Consider the following situations.

Frequently, nurses find themselves unable to meet patients' needs in relation to lymphedema education, perhaps because they don't know what to say, or because they work in settings where lymphedema education is not viewed as part of nurses' “job.” Sometimes nurses provide patient education and find that patients forget what we told them by their next appointments. Other times, nurses find themselves in the middle, stuck between patients who are angry at their physicians for “not telling me I could get lymphedema” and physicians with whom the nurses work daily.

What are nurses to do? Given the lack of detailed, formal education in many nursing schools about the lymphatic system, nurses may need to seek information about lymphatic function and lymphedema from sources such as national lymphedema organizations, books (lay and academic), and the Internet. This provides two benefits to nurses: First, it makes them better prepared to educate patients; second, because the sources are where patients go to learn about lymphedema, they provide a picture of what patients are finding on their own. Doing such research will help nurses improve their knowledge base.

In situations that involve healthcare-delivery systems or work environments, nurses function as part of larger teams and must act accordingly. If patient education about lymphedema isn't part of a nurse's job, and if the nurse cannot change that and remain employed, the nurse should know whose job it is and what patients are being told. If no one is providing the education, then nurses may wish to consider discussing the subject with the administrators in charge of their work settings. Because nurses are part of teams, they must be cautious in their responses when dealing with angry patients. Nurses may not know what physicians have said. Patients can be redirected to talk to doctors directly, and nurses can ask how they can help patients now.

Lastly, the issue of patient recall of education is a legitimate concern. As an example, I recently saw patients with a medical oncologist who is well respected for patient teaching. A patient was upset because he had developed swelling in his neck over the weekend after radiation therapy and was scared his cancer had returned suddenly. The physician reassured the patient that it wasn't cancer and talked to him about lymphedema, and the patient remembered that he had been told previously that lymphedema could occur. This real-world example suggests that following the 1998 recommendations for patient teaching about lymphedema might be helpful. The recommendations are to (1) provide education before treatment, (2) educate immediately after surgery or treatment, and (3) provide ongoing education throughout a relationship with a patient (Runowicz, 1998; Runowicz et al., 1998; Thiadens, 1998).

Take a moment to consider the role of nurses in providing patient education about lymphedema, how healthcare professionals can become more informed about the lymphatic system and lymphedema, and how nurses can best meet the needs of patients. Any ideas? Please e-mail me at sheila.ridner@vanderbilt.edu. Responses will appear in the next issue of the newsletter.

The Need for Lymphedema Education: A Patient’s Perspective

Anonymous Patient With Lymphedema

This is a patient's opinion about the need for lymphedema education. The person wishes to remain anonymous so as not to risk identification of the facility where her experience occurred. She has given permission for the newsletter to print the article and was thrilled that the Lymphedema Management SIG wanted her opinion.

I was a 43-year-old community-health nurse, a mother of two with no family history of breast cancer when I was diagnosed with infiltrative ductal carcinoma in 1997. Not having worked in an oncology setting since my student days, I reviewed my 1970s-era medical-surgical textbook on breast cancer etiology, treatment, and complications. On the day of my preoperative assessment, I asked my healthcare provider what complications I should be prepared for, including specifically asking what the chances were of developing lymphedema after breast cancer treatment. I was told that I did not have to worry about lymphedema, as it did not occur anymore following breast cancer treatment with current procedures.

Over the 12 weeks after surgery and in the midst of radiation therapy, I experienced successively an infection of the breast treated with oral antibiotics, transient swelling and tenderness of the affected forearm monitored with observation only, lymphangitis and septicemia resolving with oral antibiotics, and septicemia, lymphangitis, and erysipelas with extreme swelling and blistering of the affected arm, requiring several weeks of IV antibiotics. The final episode of septicemia led to chronic and moderately severe lymphedema (greater than 2,000 ml difference in limb volume as compared to the contralateral limb), which continues today.

Based on my personal experiences and the observed experiences of friends and colleagues who are breast cancer survivors, I believe it is honorable and ethical to inform women (and men) newly diagnosed with breast cancer of the potential treatment outcome of lymphedema (possibly related to surgical removal of lymph nodes and radiation fibrosis) and of the best understanding of risk-reduction practices, which patients can carry out as self-care activities to prevent lymphedema development. Visit www.lymphnet.org for the latest risk-reduction recommendations from the National Lymphedema Network.

Had I known what I know now (as the popular song goes), I would have insisted on aggressive antibiotic therapy at the first signs of infection and follow-up with infectious disease specialists knowledgeable about septicemia and its management. Prevention and management of infection is key in preventing and managing lymphedema.